Can I get a Witness?

Thursday, September 22, 2011

I was just informed by my UCLA study representative (we've moved into an extension study) that Otsuka will be using the Riverside Data to present to the FDA successful results in the Tolvaptan Trial. They are hoping for a fast track for the drug since it is currently in use for heart patients.Wow.Wow.

Friday, October 16, 2009

Missed me?I decided to ignore this annoying aspect of my life by not blogging for the past year. I have to say it was a relief. I've got a lot going on .I'll be done with the trial in May of next year. I was a bit disheartened this spring with my MRI results and was hesitant to post, as I would never want to discourage others. And lets face it, I shouldn't be seeing my MRIs. I should be blissfully pill popping for three years awaiting that final grade. Which is better? Discouragement or results anxiety? Of course I have no way of knowing is my results are considered a success or failure as progression of this disease has never been measured via MRI cyst count. So we really don't know if progression has been slowed significantly or not at all. My MRI showed a doubling of cysts on one kidney and a smaller increase on the other. So is Tolvaptan working on one? No one knows. Just like the famous quote about the movie business - "nobody knows anything". You just can't tell if a film will be successful.I'm meeting with a guy from the PKD foundation at the end of the month. Maybe I'm just misinformed. Wouldn't that be great? Maybe he knows.

Sunday, August 17, 2008

Wish I could offer remission as an excuse for my being remiss, but really I just checked out for a while. On May 21, 2008 I underwent to immersion into the MRI. Not as annoying the 2nd time, I got an extra pillow for my arms. Here is the results:"No growth in the size of the kidneys""Number of cysts is probably slightly increased from previous examination"Celebration? Not exactly. Perhaps my standards are too high, but I would have loved to see a reduction in kidney size, decline in number of cysts. Who wouldn't? However, as Peter from Australia pointed out, at this point my kidneys should be growing every year. Although I'm not sure where he got this "rule", it gives me pause. Is Tolvaptan working? I guess we'll figure that out over the next two years. I'll have another MRI in May 2009 (year 2) and Maybe 2010 (year three). In the meantime, the headaches are gone and I've been dehydrated only once this summer (after ingesting an evil plate of stir fry). So life is great, holding steady and feeling good.Now that I've put it on paper, it actually sounds like remission to me. Dang!

Thursday, October 4, 2007

Good question. September got in the way, I slipped into the back-to-school drowning pool and needed October to throw me the life preserver.

How am I doing? Exceedingly well thank you. If the question relates to results, I've got nothing for ya. Results in this study are determined by kidney volume. Mine will be measured again on June 2008. I tried my best to worm some info out of Lovely Lorie last week during my four month visit but she was giving nothing up. Nothing. No news, damn. My creatine level is irrelevant at this point. I'm normal and not tracking for failure in the distant future. Yes I know everyone is different but my kidneys are not that big, so really, I don't think they will blow in the next few years.

Symptom wise, no problem. I've always been a huge water drinker, we have a Arrowhead Water dispenser in the house and I now find myself guzzling half full drinks that the kids have left behind. I also grab the ecologically incorrect water bottles on my way to anywhere in the car. Problem solved. Since I don't work I can easily go as often as I want without significant disruption (not alot of buckles or embarrassing looks from co-workers). I've heard that some study participants cannot tolerate these side effects, but I'm pretty sure those individuals have never been pregnant. Yes boys, this means you. Suck it up, it may be worth it in the end.

I really do have to watch my hydration levels, especially when I want to enjoy some vino in the evening. I can get a REALLY BAD hangover on just two glasses of wine if I haven't grazed on all those half filled water glasses. One weekend the dispensor broke and sure enough, Sunday morning I felt like I had spent the previous evening gorging on jello shooters. After just two glasses of wine, not pretty.

Tuesday, September 4, 2007

Gossip. I have some.It is medical gossip.I can't verify it's truth.Don't know the people who uttered it.Couldn't tell you on which end of the telephone line this tidbit lies,Lies? Dare I be the purveyer?

Sit closer and hear this......

In a chat room, someone said thatLovely Lorie said thata participant who had been on Tolvaptan for a year hasshow a reduction in his kidney size,a lessening of pain and a shrinkage of cysts.

CAN YOU STAND IT

I CAN'T

I CAN'T WAIT TO GET INTO THAT GIANT MAGNET AND HOLD MY BREATHI CAN'T WAIT TO COMPARE MY MRI REPORTS

I'm 12 weeks +three dosage weeks into this thing. One quarter of the way through to my 2nd MRI. I CAN'T WAIT.

Friday, August 24, 2007

Tolvaptan is my methadone. When I started this trial my limited brain made a connection to my even more limited medical knowledge. If I'm taking a gigantic diuretic, then maybe I can get off my hideous ace inhibitors (that lower blood pressure). After all, diuretics were the old fashioned way of lowering BP, and I'm taking massive dose. Why not? (I'll explain why not later). So I did it, I dropped the little blue pills and withing two days I felt fabulous. I was back. No more mental fog, no more having to sit down, no more yawns. Now, we all know that following one's "feelings" is not exactly a mature, responsible way to live. I "feel" like pitching the kids out the window sometimes, but try to restrain myself. But this time, I "felt" that if I can get my heart rate up through daily exercise, lost the extra pounds, and ate like a caveman, I can stay off those nastys. So far - it has worked. I'm back to religiously taking my BP a couple times a day and can track the spikes/valleys. I can relate them to a little too much soy sauce, a lack of action at the gym. I'm running at an average of 124/82. Not ideal but I've got another 16 pounds to lose and can bump up my trips to the treadmill to daily.No, I haven't' discussed this with my neph. I'm still pissed at him for not reading my Tolvaptan info. He'll probably say that I'm missing out on the other benefits of ACE inhibitors - prevention of the thickening of the heart walls, and that while 124/82 is good, its not the ideal 110/70 that we should all aspire too. But I'm almost there. I need the time to shed the pounds and rev up the heart. I need to be myself again, for a while.

Monday, July 16, 2007

I looooooooove drug companies. I admire corporations in general and find it hilarious that screen writers today can no longer come up with any politically correct villains other than large companies. Even the latest "Pirates of the Caribbean" writers couldn't find any new monsters other than the East Indian Trading Company. Having paid my $7.50 I expected some new and improved Kraken, some dazzling CG beast. Arrrrr, nope - monster replaced by corporation, very lazy on the writers part.

But enough about popular culture, I'm writing about my favorite things - drug companies. Without them I would be a vegetable in a nursing home somewhere. Without them my blood pressure would surge to such levels the my head would explode. That little blue pill in the morning changed my life and I am GRATEFUL. Sure it too two years to snap out of the funk that my exploratory chemical cocktail put me through. I did get exhausted in the evening, even with an exemplary diet and exercise standard (OK that has only been for the last few months). But consider the alternative........

Its like anything else, you don't appreciate them/it/that until you need it. And I needed that greedy, unfeeling, inhuman, publicly traded, fairy godmother. Her avaricious fairy dust saved my life. Her Asian sister is sprinkling new dust on my forehead. Arigato.

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About Me

PKD, my timebomb. It is not how I define myself but it is why I am writing this Blog. Hereditary, my three kids have a 50/50 chance of inheriting this nasty little gene. If the disease fully progresses, as it does in 60% of the cases, I will lost the use of my kidneys by age 65. What, me worry?
FAQ:
-started Tolvaptan 6/07
-Kidneys @ 100% f(x)
-Creatine .8 to .9
-final MRI scheduled 5/2010